Long, Hot, Wet Summer

rainy day

Summer can be a challenging time for us. As much as I know Lilly would love to go to a real summer camp, I don’t feel she’s ready for it. It all boils down to bladder and bowel self-care. Can she catheterize herself? Can she clean herself up if she has a bowel accident? If the answers to these questions are no, then she’s not ready. And at nine, she’s still not ready. No matter what type of camp, if she’s going to be gone for more than a few hours, she has to be bathroom-independent.

I’ve managed to find something she can do at least part of the summer these past couple of years, through a place called Artspace. It’s a nonprofit organization that offers art and music classes to both adults and children. Lilly takes violin through school, which is sponsored by Artspace, and so there is a week during the summer which she can take a violin intensive for free.

I also managed to pay for a craft class, so she had two weeks of fun this summer. The classes are perfect for her, in that they’re only 3 hours long each day, short enough for her to get through without needing to be cathed, but long enough for her to be engaged and learn something. It’s close enough to where we live, too, so I can push her there in her stroller chair when we don’t have the car, which is often (we were lucky enough not to get caught in any rain, and believe me, it’s been raining like the Great Flood is upon us). The sweat rolled off me like Ted Stryker at the controls in Airplane on those steamy mornings, but anything for my little angel (and some time for writing).

 

The problem is, the classes are expensive. Almost prohibitively expensive, for us, though I managed the one class. There’s no financial aid available for them, and a lot of the time they’re cancelled for lack of enrollment anyway. Such is the sorry state of the arts these days.

We’ve been going to a favorite lake to swim on Sundays, where Lilly can practice her still-developing swimming skills (when it’s not raining). I’ll push her into town and visit the library, the co-op for a snack, the antique store she loves to poke around (when it’s not raining). Anything that doesn’t require too much cash.

Other than that, I fear she’s been watching too much TV. I’ve seen enough of America’s Got Talent, American Ninja Warrior, America’s Funniest Home Videos, and Let’s Make a Deal to last me several lifetimes. It’s been too hot to bake (something she loves to do), and there’s only so many times I can sit for a marathon game of Monopoly.

Here’s the thing: when I was a kid, summer was an endless adventure outside, where we left our house in the morning to bike, roller skate, and play games with our neighbors, and didn’t come back until we were called in for lunch; we’d gulp down our bologna sandwich and run right back outside until dinner. It was an endless adventure.

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I’m bored, Mom.

It’s different with my child. Lilly can’t ride a bike well enough to go it alone or even ride with other children; my husband or I need to be right there. Rollerskating is out, obviously, as well as scooters. And running around playing hide and seek? Not where we live. When I was a kid I lived in a shabby house on a shabby street, but our and our neighbor’s back yards formed a sort of enclosed safe space to play. Here, there are apartment buildings surrounded by streets with zooming cars, and we have no yard to speak of (and besides, it hasn’t stopped raining).

There’s a 3-year-old girl next door who loves to play with Lilly, and sometimes her classmate Chris who lives across the street will come over to play for a while, but that’s it, and the visits are infrequent. Her best friend Lilla moved away, and her other friend Holly hasn’t been around. What’s a kid to do?

As an only child, Lilly is pretty good at entertaining herself. But after a while it gets boring. It’s been a long, hot, wet summer, and I think for the both of us, school can’t get here fast enough.

 

 

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Monday in the Park with Lilly

playground

With the arrival of spring finally, I was able to take Lilly to the park the other day. I wasn’t even sure if she’d be interested in anything there anymore, but she wanted to go, so off we went.

The splash pad won’t be activated until the end of May, so that was out. I asked her if she wanted to go on the swings. Nah. She poked around a little, climbing up the stairs to the slide, and I felt she’d come a long way since she was a toddler and I had to help her up the steps and across the platforms. Now, I could watch from below, without (too much) anxiety, as she made her way through the structure. She even climbed up the ladder-like structure with footholds, with me just hovering below, spotting her in case of a slipped foot. But she did fine.

There’s another structure across the way that is generally for climbing, with ropes and ladders and a kind of rock wall. She’s never been able to negotiate this structure from very early on, but she wandered over to it anyway.

“Look, mom, it’s like a hammock,” she said, indicating the black ropes that did, indeed, resemble a big hammock, just with very wide gaps between the ropes. She tentatively tried to sit on part of it, but didn’t feel stable; she quickly decided it wasn’t for her. Meanwhile, kids much smaller and younger than her were zipping around, hopping onto it, climbing, hanging, swinging like little monkeys. We watched and laughed at their antics, but inside my heart broke anew. She doesn’t say much, and I often wonder what she thinks.

She went around to the side with the rock wall. She wanted to try it, but the first foothold is far too high for her to get her foot up onto it. We laughed as I tried to push her up so she could gain purchase, but she’s too heavy. She tried a few times, but gave up after a bit.

“Kids smaller than me can get up here,” she said, but not with any resentment or anger. Just a fact.

“Well, they don’t have the same challenges as you,” I said.

“No,” she said, instantly going into I’m-going-to-argue-with-mom mode. “I’m not different. I’m the same as them.”

“Okay,” I said, not wanting to push it. We wandered off to sit in the shade and people-watch for a while.

I often wonder how she views her “challenges” as I put it, how she views herself in comparison to other children, what she thinks. She’s clearly aware of differences, but doesn’t always want to admit to them, like the above example. She knows she has Spina Bifida, knows that because of it, she can’t do certain things other kids do, or rather, has to do them differently. Certain kinds of climbing, jump-roping, those little two-wheeled scooters are off the table.

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Lilly (walking) keeping up with her friends.

“I’m the slowest runner in my class,” she said to me one day, pouting a little bit. I’m getting very good at ignoring the knife-twist in my heart that these comments elicit, and go directly into Mommy-mode:

“That’s true. But you know what? There was a time when we didn’t think you’d be able to run at all. The fact that you can run [in her slow, loping way] is an amazing thing to us, a thing you should be proud of. You don’t have to be the fastest. And there are so many other things you’re good at, things that you excel in. You’re a great reader [5th grade level], a great artist, you play the violin. Focus on the things that you can do, and do well.”

She was fine after that, or at least, forgot about it for awhile. I love that she wants to keep up with her peers, that she doesn’t want to be treated any differently. I think that bodes well for the future. I like that stubbornness and determination, and I don’t want to quash it with being overprotective, but it can be hard. I have to find the line between safety and letting her try things.

Bicycle riding has always been something we wanted her to do, but it’s taken several years of trial and error to get her going on it, find the right bike, help her overcome her nervousness of wobbling on the training wheels. This year, we found a pretty purple and aqua bike that she loves. We still feel we have to jog alongside her in case of toppling over to the side, but her core strength is getting stronger and she’s staying more upright.

It’s exhausting, but worth it to see her smile of triumph as she pedals away.

Friends

Lilly is, for all intents and purposes, an only child. She has three grown-up siblings, but she’s the only child in our house; because of that, she naturally gets the attention and laser-focused love of a singular.

Sometimes I feel bad that she doesn’t have at least one brother or sister to grow up and play with. Both my husband and I come from big families (we’re both the fourth of five kids), and so we had ready-made playmates on any given day (or ready-made tormentors). But Lilly has to rely on either a) herself, b) her parents or c) friends.

Most single kids become experts at entertaining themselves, and Lilly is no exception. Lately, I can put a few bowls of odds-and-ends ingredients in front of her (flour, oatmeal, stale nuts or chips, salt shakers we never use, old ginger powder and cinnamon, a cup of water) and she’s happy for hours doing her “mixing”. We’ll ooh and aah over the sticky, goopy concoctions she makes.

Quite often, Mom and Dad are roped into games, puzzles, or blowing bubbles outside. On rainy days I’ll get out the Easy Bake Oven and we’ll make our tasty treats.

But there are times she just wants the company of other children. Other kids fascinate her. She spent her early years mostly around adults, so she’s comfortable with them and speaks to them more freely. And of course, grown-ups are more predictable and tend to cater to children. Kids, though–they’re exotic, mysterious creatures. You never know what they’re going to say or do. Oftentimes, she’s content just to watch them. She rarely approaches them herself; she waits for them to approach her.

And they do. Besides the fact that she’s a sweet, likable child and allows others to lead, there’s something about Lilly that draws kids to her. It might be the spina bifida–she’s different because she wears braces; she has to go to the nurse twice a day for some mysterious potty ritual; she walks a little differently. At this age, it’s okay to be different. It’s interesting. Kids are open and curious, never malevolent, as far as I know.

But in two years, that might change. In two years, she’ll be in fifth grade, and will have to leave her safe, inclusive elementary school. She will have to enter the portals of Hell: otherwise known as Middle School. It’s when kids suddenly turn into little monsters and devour each other, dividing into the strong and the weak, the cool and the uncool.

It’s a fire we all have to pass through, but I’d rather re-live it myself than witness my daughter go through it. It’s a whole different world: bigger, more confusing, with less safety nets. You have to find your own way. And it hurts.

wrong

I dread this period more than anything I can think of, remembering my own awkward, bumpy path, the sudden, inexplicable betrayals, the cruelty I witnessed or sometimes suffered through. And I didn’t have a disability, this extra thing that makes you different. I can’t imagine navigating this pre-pubescent gauntlet of conformity with something that makes you stand out. She has no idea what’s coming, and I’m trying not to hyperventilate with anxiety (two years in advance!)

Maybe it won’t be so bad.

Yeah, and maybe sticking needles into your eyeballs won’t hurt, either.

So anyway, I’ve hung my hopes on Lilly having a strong cadre of friends as she enters Middle School, a posse of kindred spirits she can feel a part of that might protect her from the worst parts of this brave (awful) new world (something I, in my perverse social awkwardness, never really had). At least one good, close friend she can rely on, confide in, and hold onto during the storms.

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Hugging Holly at Lilly’s 8th birthday party.

Lilly has had a string of close friends since preschool. Holly was her bestie in preschool, but alas, she’s a year older and left for elementary school before she did–and to a different school than the one Lilly ended up going to. Contact since then has been sporadic. Annalise was often by her side in kindergarten, but they went to different first grade classrooms, and have since drifted apart a little. (I went to a small elementary school where there was only one class in each grade, and the same kids moved up to each grade together. You could count on seeing the same kids every year). Adrianna adored Lilly in first grade, but she moved away last summer.

This second half of second grade has been spent with Lila (pronounced like “Lilla”)–yes, Lilly and Lila. Apparently, they’re inseparable at school, and Lila lives in the same apartment complex that we do. It’s perfect–we planned getting the girls together a lot this summer. But as fate would have it, it seems Lila, too, will be moving away, to Florida, this September. Lilly can’t seem to catch a break in the best friend department.

Friends often come and go–that’s life. But I’m hoping that in the next couple of years, Lilly can find a good friend or two that she can hold hands with as she passes through the gates of Hell–I mean, Middle School.

 

What If

In my fiction writing, the question “What if?” is a great way to get stories going. What if an abused woman discovers she can leave her body? What if a young boy makes friends with the monsters in the basement? It serves a creative purpose, and it’s a fun question.

But in my real life, I’m getting a little tired of “What if”.

Lilly is part of the chorus group in her school and they participated in a concert last week that included the middle and high school chorus and bands. They were to sing two songs at the very beginning of the concert, and one last song together with all the groups at the end. She was excited and we looked forward to it, but I didn’t think too much about it beforehand.

The concert started at 7:00 pm and we made sure Lilly got there at 6:30 to assemble with her group in the cafeteria. My husband and I headed for the auditorium to wait for the concert to start.

As soon as I entered the auditorium, my stomach dropped. Up on the stage was a three-tiered platform that the singers would stand on during the concert. Of course there was. Why hadn’t I thought of that before? Lilly would have trouble getting up onto that thing. Did the music teacher know? Did Lilly even know about it? What if she had to climb up onto the top tier? Even if she got up there, she’d have to stand on that narrow strip ten feet off the floor, surrounded by fidgeting kids, for at least ten minutes. What if someone bumped her? Her balance is such that she’d fall. What if she fell off that thing in the middle of the performance? What if she couldn’t get back down? What if, what if, what if…

I sat in my seat with knots in my stomach, wondering what to do. Should I run back and find her music teacher and warn her about all this? I tried to relax, breathe, talk to my husband, but I couldn’t stop thinking about that damn platform. Why hadn’t I fully interrogated the music teacher about the set-up? What kind of mother was I, to not make sure that my child was safe? What if she broke her neck, knocked her teeth out, took some kids down with her? And on and on.

The minutes whittled away, and it was finally show time. I sat perched on the edge of my seat, waiting for the kids to file onto the stage and take their places. I was ready to bound up there at any moment to help her, hold her hand, explain the situation to anyone who would listen. I hoped she would end up on the very first, lowest platform.

There she was, in her white blouse and black pants, striding up to the platform in her lilting gait. When she reached the first ledge, she stopped, knowing that she couldn’t just step up there like all the other kids. I held my breath. The music teacher, standing in front of the platform, noticed her hesitation, and held out a hand to help her up. She ended up on the second platform, on the left-hand side. Okay, she was up. Now she just had to not fall for the next ten minutes.

I didn’t take my eyes off her during their entire performance, willing her to stay upright. She sang, and didn’t fall. When it was time to go, the teacher helped her down, and she strode off the stage without a problem. I sagged back into my seat, relieved that she was off that tower of death.

The rest of the concert was enjoyable, and Lilly had a good time. Nothing went wrong. On the way home I asked her if she knew about the platform. “No, but I made it through,” was her reply. No big deal.  All she could talk about was the middle school boy who belted out “Thriller” with his group.

So the night was a success, but I was an emotional wreck. Near tears, in fact. Probably just the aftermath of my intense worry, but what if this was the rest of my life? I realize that every parent worries about their kids in some form or another, and that it never goes away. But it’s a bit overwhelming when you have to worry about the normal stuff that most people don’t give a second thought. Singing at a concert, for instance.

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What are you freaking out about now, Mom?

This week Lilly starts swimming at the YMCA with her class at school. Just send a towel and a bathing suit three times a week. No big deal, right? Right. When I first heard about it a few months ago, my first thought was “Oh shit.” Then my next thought was “How can we make this work?” Because all the “What ifs” started their chorus in my head. What if she slips and falls on the wet floor? What if she has a poo accident in the pool? What if she drowns, for god’s sake?

I have to say that the school staff have bent over backwards in making sure Lilly can take part in this. I’ve talked with the school nurse and her physical therapist, who talked to the principal, who talked to the Y staff; and they’ve found a great teacher’s aide who is willing to go with her to the pool and help her with just about everything. It helps to know that I’m not alone in this, and that the school staff loves her and will do what they can to make sure she’s included in a safe way.

Her first day of swimming was this past Monday. Everything went fine. She had a blast, and wishes she could go everyday.

I still worry. I always will. But I have to learn to trust that everything will be okay, that Lilly is a strong, determined little girl and that there are others who are willing to help.

Here’s a more constructive What if: What if I trusted in a supportive universe? There’s always hope, I guess.

 

 

Fear

doctor-appt

Lilly’s been struggling with urinary tract infections, at least 4 or 5 over the past year. The last time she had such trouble with them was when she was a toddler. Back then they usually progressed far enough for fever to tell me what might be going on; these days she’s much more articulate and can describe her symptoms, usually pain in her lower abdomen, pain when cathing, and just being tired beyond the usual, before it gets to the fever stage.

In between these two trouble spots of UTIs, there was a period of years when she didn’t have a single infection. For some reason, between the ages of 4 and 7, we had a good run, and I became complacent. I thought, foolishly, maybe we’re clear now. Maybe UTI’s won’t be such a problem for her. Maybe we can get away with this. Silly, silly Mama. UTI’s will always be an issue for Lilly. Some years will be good; some will be troublesome.

I can deal with that reality, except that any problems or concerns about her bladder dredge up a deep fear in me. Several years back, we took a few trips to Boston Children’s Hospital because the pressures in her bladder were high, and her medication at the time wasn’t helping. We were exploring the idea of using Botox to relax her bladder if nothing else could be done; otherwise, the only alternative was bladder surgery (in which a piece of tissue from her intestine would be sewn onto her bladder, in order to allow it to expand more easily and fill with urine).

The bad news was that Lilly’s bladder was not a good candidate for the Botox treatment; the good news was that by the time we actually got her to Boston for the urodynamics tests, the pressures in her bladder had gotten better (I believe it was due to changing her medication to a pill form rather than a liquid in the meantime, and so she ingested more of the medication that way). Anyway, it was a huge sigh of relief, because if the pressures hadn’t normalized and the Botox was a no go, the only option would have been the surgery.

The prospect of this surgery terrified me more than words can say. We had gone through a tethered cord surgery (surgery on her spinal cord) when she was three, and even though the operation went well and was considered a success, it was a nightmare time for us. The idea of your child going under the scalpel and undergoing a long, painful recovery is easily one of the most horrible things I can think of. I’m certainly grateful that modern medicine makes it possible for my child to live and to continue living, for the most part, in good health. I’m also aware that a lot of kids with Spina Bifida go through dozens of surgeries in their lives, from shunt malfunctions to spinal fusion to orthopedic surgeries. My kid has only had two (repair surgery at birth, and the tethered cord surgery). Lucky, indeed.

But it’s not something you can ever get used to, no matter how many or few surgeries your child has had. It’s still stressful, it still strikes fear into your heart. This sudden spate of UTI’s concerns me, and is something I’ll discuss with the doctors at Shriner’s in March; I try not to think the worst, but the fear creeps in nonetheless. It’s a monster I constantly have to control and tame. Maybe that’s why I’ve been writing so many horror stories lately–it’s a way for me to channel the fear that invades my life now and then.

While working on this post, I came across a quote about fear on Kristen Lamb’s Blog. She was referring to fear in your writing life, but it works just as well for any kind of fear (she quotes Paul Atreides in Dune, by Frank Herbert):

I must not fear. Fear is the mind-killer. Fear is the little death that brings total annihilation. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain. 

Lilly will, too. And that’s the most important thing.

Mommy Guilt

When my sister was 13, she got sick. She lost weight, was thirsty all the time, peed a lot. She got dark circles under her eyes. When my mother took her to the doctor, she came home later alone, as my sister had been admitted to the hospital.

“She has diabetes!” I’ll never forget the edge of anger in my mother’s voice as she made the announcement, something I noted but didn’t quite understand.

I’d never heard of diabetes, and my mom didn’t know much either; she tended to call it “sugar”. She spent days in the hospital with my sister, learning about the pancreas, and insulin, and ketones and sugar, and using an orange to practice giving insulin shots. This was a tough time for my mom-she was raising two girls alone after a heartbreaking divorce, on welfare, alone when she’d never been alone. Now on top of that, a sick child, learning medical procedures, measuring insulin and injecting her child several times a day in the arms, legs, buttocks, stomach, monitoring blood sugar with pin-pricks to the fingers. It was all very overwhelming for my mom, but she hung in there and did what she had to do for her child.

It was much later, as a young adult, that I learned she felt massive guilt. She believed that it was her fault that her child developed diabetes. I couldn’t fathom it. How could it be her fault? It just happened. I’m ashamed to admit that I thought it a little silly, a ridiculous mom thing that made no sense.

You can see where this is going, right?

Fast forward 15 or so years, and I’m drowning in my own mire of guilt, grief, and anger, when we got the SB diagnosis for Lilly. After the initial thoughts of “How could this happen?” came the inevitable “It’s my fault.” The child came out of me, therefore, it must be my fault. If she hadn’t come out of me, she wouldn’t have this.

boromir-sb

Finally, I understood what my  mother had gone through, the thought processes that led to her conclusions. I finally understood the guilt, and that puzzling anger when she came home that day. It all made perfect sense.

It’s taken me several years to get a handle on all of these rioting emotions. What helps is a healthy, happy little girl, and procedures that are just a part of our normal routine. There’s also this realization: feeling guilty is a bit silly, a ridiculous mom thing that I shouldn’t waste my time or energy on. Acknowledge the emotion, and move on.

(Note to self: Ask mom if the feeling ever goes away).

The Summer of Poo

I’m not talking about Pooh Bear, here.

Pooh

I’m talking about-you guessed it-poop. When you have a child with Spina Bifida, you can’t escape it. Most parents deal with dirty diapers until the age of 2,3, or 4 at the latest, and are glad to be done with them.

Lilly is seven and a half, and we’re still dealing with them.

But not to the extent we have in the past. It’s getting better, and the reason is because of the new bowel program we’ve worked so hard on this summer. It’s called a cone enema, and I knew it was our last hope of keeping her clean.

Summers were always a frustrating time with the issue. Lilly loves to swim at Laurel Lake every summer, but of course we need to put swimming diapers on her. The largest size still fits her, but just barely. But it never failed that she’d have a fairly “poopy” day on these days. Every hour or so, I’d have to change her inside the hot, closed up sun shelter we had on the beach, or troop her up two flights of stairs to the dirty, spider-infested changing room and lay her on a bench to clean her up. I’d haul her huge bag of diapers, catheters, wipes, lubricant, diaper cream, rubber gloves, and sanitizer with me and spread it all out. Then I’d proceed to peel off the wet, dirty swimming diaper, careful not to spill out any solid contents (though the water would mostly swish it about and reduce it to the consistency of the sand that also made its way in there). And I’d wipe and wipe and wipe sand and poo away until the sweat dripped off my face. Several times in 5 or 6 hours I’d do this, even this past summer when we were still getting the hang of the cone enema.

The procedure itself is fairly simple; it’s the variables that make it a long process of trial and error. Every night or every other night? Plain water, or additives? If additives, baby soap, glycerin, castile soap, or something else? How much water, and how much additive? How long to keep it in? How long to keep her on the toilet? Keep giving Miralax orally while on the program, or can we dispense with it?

After eight weeks, I think we have it almost where we need it to be. She’s staying clean for most of the day, and may have an accident later in the day, or maybe not. Last Wednesday was her first day of second grade, and my goal was to have her clean at least socially, while she was at school. I still put a diaper on her, just in case, but if things go well, we might be able to put her in her Frozen “big girl underwear” we bought last week. Hurray!

frozen undies

It was a lot of hard work, and still is-every night we have to carve out an hour from start to finish for the procedure. We may have to miss out on some evening events (school or otherwise) because of that hour. But I wouldn’t give it up for the world, if it means some kind of  normalcy for Lilly. So far she’s been a trooper, with nary a complaint from her, even when it causes some discomfort. I think it helps that she can play games on her ipad while she sits on the potty. I won’t grudge her that playtime; she deserves it.